Let’s get something out of the way: I say this out of love and respect. I say this as a fellow artist (albeit an unknown one). I also very much doubt that the people involved in this project have created it with any bad intentions. That said, however, intentions don’t equal a free pass for an end result, particularly if the end result is problematic.

I am conflicted, to put it mildly, about this latest project in which singer and pianist Amanda Palmer has involved herself (full disclosure: I am a fan of Palmer’s music). For those who need a refresher, she and fellow musician Jason Webley are performing together as Evelyn Evelyn, a fictional set of conjoined twins and former circus performers with an elaborate past who reside in (of course!) Walla Walla, Washington. The group’s upcoming self-titled album seems to be getting quite a bit of press in the indie world. Part of the press release reads as follows:

Rather than being limited by their unique physical condition, the Evelyn sisters prove that two heads are indeed better than one. Audiences will marvel at the twins as they dexterously perform their original compositions on piano, guitar, ukulele, accordion and even drums.

Ah, yes! It’s the “overcoming disability” trope, with a heaping side of totally unexpected and not-at-all-stereotypical circus-freakdom. Might Evelyn Evelyn be musical Supercrips?

And then:

Unsatisfied with the grind of circus life, at the age of nineteen the twins decided to explore a solo career. It was then that they were discovered by Amanda Palmer and Jason Webley, who heard the twins’ music on MySpace. Webley and Palmer encouraged the twins and offered to help them record a proper album.

The album will be accompanied by a full US and European tour and – later this year – a graphic novel about the twins’ inspiring life, illustrated by Cynthia von Buhler and published by Dark Horse Press.

The stereotypes about disability here are pretty well-worn: according to this (fictional) backstory, the twins were “discovered by” and need “help” from two abled individuals, Palmer and Webley, to realize their musical potential. Add to this their “inspiring” origin story — which is fodder for a graphic novel tie-in — and you’ve got yourself one hell of a three-ring circus of disability stereotypes.

Thus far, it looks like Evelyn Evelyn’s primary aim is to be “inspiring” to abled folks (and to be a bit of creative fun for Palmer and Webley). The three songs currently available on MySpace only serve to continue this trope; “A Campaign of Shock and Awe,” in particular, casts the twins as “the 8th wonder of the natural world.” Good to know that even fictional people with disabilities are not exempt from being cast as “wonders” from which non-disabled people can draw inspiration and “marvel” at. Soundfamiliar? Add in a dash of hipster ableism and you’ve got something that looks positively transgressive, especially in comparison to the rest of the music industry.

Unfortunately, Evelyn Evelyn seems like a project that is far from actually being transgressive, even given the initial appearance of said transgression (because what’s more shocking and weird than conjoined twins, at least according to abled culture?). The project, as far as I can tell, makes no reference to the ways in which actual people with disabilities are treated in Western culture; this probably seems like a tall order for any musical project, but there is a chasm of difference between at least acknowledging that there are people like this (in this case, conjoined twins) who do exist and that they probably are affected by ableism, and outright appropriation of this uniqueness in the name of art. Certainly, Evelyn Evelyn is fictional, and while Palmer and Webley are not required to make any sort of political statement, the seeming lack of awareness that there are actual conjoined twins and that they do not only exist for abled artists’ dressing-up-and-performing purposes is rather troubling.

The larger cultural context of treatment of real people with disabilities, too, is conveniently forgotten (see the lyrics to “A Campaign of Shock and Awe”); the twins seem to exist in a world that is completely free of ableism (in forms subtle and not), harsh social treatment of PWDs by abled people, and pernicious, damaging stereotypes. This is particularly disappointing given that Palmer has written some great, quite un-stereotypical songs about PWDs and people with mental health conditions (one of which I wrote about in a blog post for Bitch Magazine).

I am a person with disabilities. I am a music fan. I am (sort of) an artist — one who mostly does graphic work about the disabilities of non-fictional people. However, Evelyn Evelyn, as a multimedia project, seems designed to keep people like me — real people with disabilities — out; this is not a new thing, considering the attitudes that folks in our culture hold about people with disabilities and their acceptable social roles. There are other, more creative ways to portray people with disabilities that don’t rely on facile stereotypes or on the ways that PWDs are already represented in popular culture. Representing Evelyn Evelyn as variously inspiring, freakish, weird and a “wonder” just reinforces existing stereotypes about PWDs, while ignoring the cultural context in which the project was conceived; while Evelyn Evelyn may be artistic and, at first glance, “different,” the attitudes beneath the project’s surface seem awfully mainstream.

Special commenting note: First-time commenters, please read and abide by our comments policy. Kindly refrain from commenting if your argument consists of any of the following: “You just don’t get it,” “You do not understand art,” “You are taking this too seriously,” “Evelyn Evelyn is not real, therefore the stereotypes about disability examined here do not matter,” “Justify your experience and/or disability to me, NOW,” “Why are you criticizing Amanda Palmer? She is brilliant; how dare you!” I am familiar with all of these arguments — please be aware that they will probably not add anything to the discussion because they are classic derailing tactics, and I will most likely decline to publish comments that utilize the above arguments.

Similarly, this is not a thread in which to discuss how much you like or dislike Palmer or Webley’s music in general; comments to the effect of “Her/his music sucks and here’s why” will not be allowed, as they are also derailing.

This is a complicated post on a complicated issue. That’s one of the reasons it’s not marked 101. I’m trying to write this without being judgmental of the fetish community (after all, I belong to the fetish community), but I am addressing devotee culture here, and I do have some pretty harsh things to say about it, because it makes me uncomfortable. And it makes other women with disabilities uncomfortable as well, because it plays into a lot of complex social issues; from bodily autonomy for people with disabilities to inherently unequal power dynamics. You may well disagree with the content in this post, and I invite your discussion in the comments, but I would like to draw your attention to this line in our comments policy: “This is not a space for chasers and devotees to hook up. We discuss sexuality plenty, but we discuss the authentic desires and needs and pleasure of people with disabilities as full humans and from our point of view; not as sex objects for others based only on the specifics of our particular impairments.” I also want to stress that it is not about the judgment of individual lives and sexual practices; it is not my place to tell people what is and is not ok, sexuality wise (or asexuality wise), this is just an attempt at articulation of my feelings, as a disabled individual, about devotee culture. In other words, comments on this post are going to be heavily moderated.

I’d like to start by telling you a story. This happened a few years ago, when I was living in San Francisco. I was attending a play party with a frequent play partner, and we were sitting together while we waited for some space to free up, talking out the specifics of our scene and catching up since we hadn’t seen each other in a while, when someone approached us.

“I really love your body,” he said, staring at me. Considering that I was not wearing fetishwear or really anything which would invite commentary on my body, I was a little surprised. I thought that he was possibly going to ask me to play with him, and I was getting ready to launch into me “I don’t play with people I don’t know and also you are creeping me out” spiel when he added “I would really like to feed you.”

Believe it or not, despite the fact that I’m fat, I hadn’t heard of feeder culture at this point. So I just sort of looked at him blankly, thinking is he asking me out on a date? This is weird.

“I’d like to feed you, and take care of you,” he said. Ok, I was definitely getting creeped out here. “It would be an honor,” he said, “if you would let me take you into immobility.”

At this point, my play partner thankfully intervened and managed to chivvy him off without too much of a fuss. When she came back to me, I looked at her and said “what was that guy talking about?” And she said “you haven’t heard of feeder/feedee fetishes?” And I said “no,” and she explained, and I realized that there were people out there who actually fetishized me for my body type. Not only that, but who fetishized the idea of creating a permanently unequal power dynamic by fattening me to the point where I could not move.

I felt ill.

And this is how I feel when I am confronted by devotee culture. For those of you not familiar, devotees are people who experience sexual attraction to disability. Not to people. To disability. Attractions to specific impairments, even; some people like redheads while others prefer blondes, and evidently some people prefer above the knee amputees while others go for wheelchairs.

As a member of BDSM, kinky, and alternative culture, I don’t really have a problem with fetish culture. I used to have a dear play partner who was a foot fetishist and he liked nothing more than to play with my feet and/or shoes for hours. I was cool with that. Yes, it was objectification of a body part, but it didn’t arouse these feelings of deep emotional distress in me like devotees do. We were fully consenting adults and there was no problematic power dynamic going on there. And devotees are often about a strange form of power play; to some extent, the fetishization of visible disability is about fetishizing power over marginalized bodies. There’s a difference, for me, between, say, a leather fetish or a bathtub duck fetish or a high heel fetish and a fetish for a particular type of body. There are also degrees of power play, and devotee culture, to me, feels like a very unsettling form of power play.

Disability fetishism is not the only form of fetishism which focuses on fetishizing marginalized bodies. For example, racial fetishes are quite widespread. As are fetishes of children and teens. These bodies are already dehumanized in our society and culture; fetishizing them is extremely problematic because it adds to their dehumanization. People in marginalized and oppressed bodies have been on the powerless end of the power dynamic for a very long time. To engage in a fetish which is structured around the dehumanization of disempowered bodies is a problem.

It’s not about the attraction to the disability: It’s about the attraction to perceived helplessness, it’s about the discomfiting power play, it’s about viewing an entire class of people as sex objects. An entire class of people whom, I would note, have historically been abused because people view them as objects. The same problem occurs with things like racial fetishes and the fetishization of children; the fetish is an echoing of a historical problem. Our social power structures already objectify marginalized classes of bodies, so why would people who live in those bodies want to sexually gratify someone by being the object of a fetish?

The problem is not disabled sexuality: It is the sexualization of disability. Which means that if you’re an amputee and you’re running in shorts and you pass a devotee, you are suddenly viewed as a sexual object, instead of a person running. That’s forced sexualization, taking sexuality outside the bedroom and other sanctioned sexual spaces and thrusting it into daily life. And maybe that’s what troubles me. Just as it troubles me that women can’t go out in public without being perceived as sex objects by society at large.

A body is not something you can take on and off. When someone is done with a foot fetish scene, the heels can be put away. When someone is done with the bathtub ducks, they can be put in the closet. When someone is finished with leather play, a pair of jeans can be slipped on. When you are done exploring power play, you emerge from the scene and return to a more equal state. You can’t do that with a marginalized body. When your body is someone’s fetish, you are an object. You are disempowered. All the time. You can’t escape.

I don’t see anything wrong with able bodied and disabled people engaging in sexual activity. I don’t think that’s necessarily inherently inequal or any of my business, really; if sexuality is egalitarian and based in attraction to the whole person, and for people who are interested in it, if power play is carefully negotiated and happens in controlled environments, I think that’s dandy and great for everyone. And perhaps that’s what troubles me so much about devotee culture. I dislike the fact that there are websites with “stimulating images” which are clearly taken from people’s personal lives. Post a casual photo of yourself on Facebook with friends, get ready for a devotee to lift it to wank off to. When I engage in power play, it’s with full awareness, knowledge, consent, and, yes, control, regardless as to which side of the dynamic I’m on. When I engage in fetish play, it is with things which I can put away when I am done. When someone steals something, a part of me, without consent and sexualizes it, that’s not consensual. When someone’s body is the fetish, there is no putting the fetish away. The scene never ends.

I think it’s great to see disability-positive porn, erotica, and other materials celebrating disabled sexuality. But I am not ok with devotee fetish materials, because they strip bodies of agency. They reduce people to their component parts and disabilities instead of viewing them holistically. I am not ok with the idea that sexuality can be forced on people in their daily lives and routine activities, whether those people are sexual or asexual, partnered or not, etc, because people fetishize their bodies. Just as I think that a woman should be able to jog in lightweight, sensible exercise clothing without being hooted at, I think that someone with a disability should be able to go to the bank without wondering if ou is going to be fetishized by someone in line. I think that a Black woman should be able to walk into an office without being viewed as a sex object. I think that a child should be able to play on a playground without being objectified.

I think it’s interesting that devotees tend to focus specifically on disabled women, who are often disempowered by intersecting systems of oppression. Just as other fetishes of types of bodies focus primarily on people who are disempowered. Indeed, disabled women are at higher risk for sexual assault than able-bodied women, which turns this into a particularly thorny issue. For sexual women with disabilities, sexuality can be very empowering, can be a way of taking back power, in fact. To be reduced to a fetish object is to have that all taken away. I’m not asexual, so I can’t speak to that experience, but I imagine it would be extremely upsetting to be the object of a sexual fetish when you are not sexual. And also immensely disempowering, since this is a society in which sexuality is assumed and almost expected, making it hard enough to navigate without thinking about whether or not someone is getting turned on by your leg braces. Whether you are sexual or not, your body is not a sex object, and should not be viewed as one. No matter who you are.

The problem with devotees isn’t that people with disabilities are gross and cannot engage in sexuality. The problem is that people with disabilities are not objects which should be used for sexual arousal. You get off polishing my shoes? Terrific (and please, come over, because I’ve got a serious backlog over here). You get off thinking about disability? No, thank you. I am not my disabilities.

The problem with objectification of marginalized bodies is that it reinforces social and cultural norms. It echoes the idea that people who live in marginalized bodies are public property, and that it is acceptable to treat them as such. It forces people who are living in ordinary bodies into the position of being sexualized against their will.

Some devotees even go as far as to say that they are empowering for people with disabilities because they are attracted to people because of disability, rather than magnanimously overlooking disability. But, actually, that’s not empowering at all. Just like it’s not empowering to be fetishized if you are Asian, or Black, or Latin@. Just like it’s not empowering to be fetishized when you are 12 years old, doing your 12 year old thing.

I dislike the claim that I will “change my mind” once I explore it. My mind is pretty made up here, honestly, and the tone in which this is said carries a degree of force which I am deeply uncomfortable with. Just as I don’t tell straight people that they will love gay sex once they try it, I ask that people not force their sexuality on me. I’m already being used as a sex object against my will every time a devotee gets excited when I use my inhaler in public (and yes, it has happened). Somehow, I don’t think that’s the start of a wonderful relationship.

You can’t “change your mind” when you are living in a marginalized body which is being sexualized, because there is no escaping your body. You can be open minded, experiment in bathtub duck play, decide it’s not your thing, and not do it again. You can’t do that when your body is the object.